Patient Advocacy: Tears and Triumphs with Stacy
Hear about Stacy’s journey from healthcare executive, to caregiver, to her triumph over stage IV colorectal cancer
Stacy’s story spans her experience as a healthcare executive, to being a caregiver to her son, to her triumph over stage IV colorectal cancer, and beyond, as she applies what she’s learned back to healthcare. She’s incredibly resilient, funny, and positive, as you can tell from her infectious smile. Here is her story.
Tell us about you and your health journey.
My family is my whole world. My older son, Griffin, is 16 and a sophomore in high school. My husband, Drew, is my rock, my hero, and every day makes me a better person. Our younger son Emmett is 14. (I’ll talk more about him a little later!)
Working in Healthcare
I went to Penn State for my undergraduate degree, then the University of Pittsburgh for my graduate degrees, an MBA and a Masters in Health Administration. I began my career in healthcare management at a health IT company as a customer service representative. Then I went to a physician practice management company and worked side by side with physicians. If you ever want to have a tough conversation, tell a doctor that he’s not hitting his revenue goals! Then I went into pharmaceutical sales, and I was doing swimmingly well at that.
Becoming a Caregiver Emmett was born in 2005, and we noticed right away that something was a little off. He missed all of his six-month milestones, so they recommended he get an MRI. When the MRI came back, instead of seeing gray matter in the brain, it was completely white, which they call “demyelinated.” We were sent into a myriad of appointments, tests, and bloodwork.
Eventually, they identified that Emmett had a “Q duplication” on his first chromosome and that he was one of three known cases in the world. One of the specialists we saw told us, “Your son will never walk or talk, get used to it.” Just like that! And I wanted to punch her. It was at that moment that I decided we were going to make the best possible life for Emmett.
Now, at age 14, Emmett still doesn’t walk or talk. He functions at the level of a six-month-old baby — we have to feed him, medicate him, lift him, diaper him, sit him on the toilet, and he’s up several times a night. He can sit up and bear weight, and that’s more than the doctors ever expected he would do. To me, that’s a personal victory.
He is the sweetest, kindest, most gentle little angel. When he looks at me with his big blue eyes, I know that he knows I’m his mother, and that’s my everything!
We have a nurse that takes him to school because he’s an aspiration risk, but aside from that, we have no other help, and it’s extraordinarily tough. He doesn’t sign or point, so we figure out what he wants through a series of cries.
Surviving Cancer Once Emmett’s care was under control, I went back to work for a drug company in 2011 as the Vice President of Training and Development. I was getting back into my career and then in 2014, I started experiencing symptoms of rectal bleeding, fatigue, and just not feeling like myself.
I went to the doctor who said it was likely internal hemorrhoids or irritable bowel syndrome, but she sent me for a colonoscopy just to be sure. On September 11, 2014, I went for the colonoscopy and the clinician found a tumor that was 11 centimeters. He aborted the procedure, woke me up, and told me I had cancer.
I underwent a battery of tests, a CT scan, and a PET scan. When the PET scan came back, it revealed I had cancer in 27 places in my body including my rectum, liver, lungs, and lymph nodes, and I had a less than 10% chance of surviving five years.
Despite all that, on my first scan after treatment, I was classified as an “exceptional responder” — my tumor shrunk from 11 centimeters to 3 centimeters, one of my liver tumors resolved, and four of my five lung tumors resolved. I kept looking at my family and at my husband diapering Emmett and thought to myself, “I can’t not win this battle.”
In April 2015, I had a mishap during surgery in which the surgeon nicked a blood vessel. I lost half of my blood and coded, went into cardiac arrest and came close to death. I wound up in the ICU, was there for five days, and then resumed chemotherapy once I was discharged.
After 55 chemotherapies, two surgeries, and radiation on my lung, I was declared “no evidence of disease” in March 2016, and I remain cancer-free.
I haven’t been on treatment since the end of 2017, and they don’t really know what to do with me because they don’t have anybody like me.
You got very little empathy at multiple points of your journey, both with your son and your cancer. Are there ways awareness around empathy can be elevated?
At the University of Pittsburgh, I had the opportunity to speak with first-year, first-day medical students. I talked to them about the unforgettable line the physician delivered to me about Emmett and told them, “If I can leave you with one thing, do not ever, ever say that to the parent of an impaired child.”
Empathy is definitely something that needs to be taught in medical schools. They can have both honesty and empathy — and I know that because I do it every day. I have to tell some patients very bad news, but I do it empathetically.
Every conversation should be followed up with, ‘what can I do to help?’ Even though some people aren’t good at asking for help, if you keep asking that question, it’s going to open the door, and eventually, they’ll open up because it shows you care.
Can you share your experience becoming a patient advocate?
As I was battling my illness, I started volunteering for a bunch of nonprofits and advocacy organizations, such as the Colorectal Cancer Alliance, Colon Cancer Foundation, and Fight Colorectal Cancer. Then I took a job with one of them, the Colon Cancer Coalition, whose mission is to empower local communities to promote prevention and early detection of colon cancer.
Everybody should go work for a nonprofit because the nonprofit world is super tough. I came from big pharma, where I would go to these lavish meetings where they’re spending money like nothing, to working for a nonprofit, where I once shared a hotel room with three other women for an event because our mentality was that we’re really mission and purpose-driven. You’re aware that donors are giving you this money and you want to spend it wisely. You want it to all go to the patients to find breakthroughs and a cure.
In 2017, I was on an advocacy trip for The Colon Club, and Southwest Airlines lost my luggage. I was going to chemo the next day and had some really special items in the luggage that I needed for my treatment. A woman who works for Southwest tracked down my luggage, delivered it to my house at three in the morning, and told me she related to me because her dad had had cancer. She even put a note in the luggage wishing me luck.
I reached out to Southwest Airlines to let them know this woman deserved an award, and I got a generic ‘thank you for your feedback’ note, but that wasn’t good enough, so I took to social media and it went viral. All I wanted to do was to highlight this wonderful woman, Sarah, but all of a sudden I became the poster child for cancer patients.
I created a website to make it easier for people to reach me, so I wouldn’t have to keep retelling my story and to catalog all of the media I was doing. I get tons of emails every day from patients with various cancer stories from all around the world, telling me they found my story and that I’m a pillar of hope for them, which inspires me to think of myself that way. I wanted to start a business like coaching, but I didn’t have the heart to do it — I’ve never taken a dollar from a patient for all the advice I’ve given out.
I’ve taken all of my professional healthcare experience, my caregiving experience, and my patient experience fighting backstage four colon cancer, and I’m just now creating a new career as a patient experience consultant.
Emmett is my top priority, but I accept jobs here and there on a project basis speaking to and consulting with companies who want to do better connecting to the patient experience in different focus areas from marketing, to operations, and training.
What has been most satisfying about your healthcare experience?
All of my relationships with my health care team. My oncologist, Dr. Reyes, is my biggest cheerleader. I regularly hug him, kiss him and tell him I love him. And he says, “I love you too, Stacy.”
My nurse Michele is now like one of my BFFs. We text and snap each other every day, and go out and drink margaritas.
We had (and still have, since I’m still regularly monitored) a collaboration; we were a team in my care. Dr. Reyes let me call the shots in my treatment and we had a free flow of information. It was definitely a collaboration. It wasn’t an adversarial relationship, with him telling me what to do and I did it. It was always a two-way street, and I always had a say in my care. I assumed everybody was like that, but now as an advocate, I’m learning that’s rare.
So I’m realizing what a treasured relationship I had with my whole team, and that was amazing.
What has been most difficult about your healthcare experience?
Without a doubt, it was caring for Emmett AND having stage four cancer. Alone, each of those definitely would have been enough, but caregiving for Emmett is all-consuming. I can’t even have a 9-to-5 five job, because I’m on the phone all the time fighting for equipment and nursing coverage for him, refilling medications, ordering diapers, and that’s a full-time job in itself.
Doing both of those simultaneously was the most difficult experience in my life. I had a 48-hour pump of chemotherapy via a slow drip into my port, and when I would get that pump off, that was the highest toxicity of medicine in my system. Disconnect days were the worst, I would nap but I had to keep going — I had to for Emmett. The next day, I’m lifting him, diapering, medicating, and feeding him, and that was tough.
But with that being said, the fact that I kept moving is why I’m still alive — because I had a purpose to live for.
What are you most concerned about with regard to your healthcare?
One of my “pillars of preaching” is the effects of my cancer treatment on my survivorship. We’re going to have 22 million cancer survivors by the year 2030, and nobody is doing anything about survivorship. If you’re not slicing, dicing, testing or pressing as a doctor, or as a health care system, you’re not making money, and nobody cares about you.
I woke up in terrible pain in December and went to the Emergency Room. Turns out, I had a stomach bug and broke a rib throwing up because my bones were so weak from chemotherapy. Nobody had told me that I had to do anything about that. I also had to have gum graft surgery on my teeth because the chemotherapy had eroded my gums, but nobody told me I was going to have to deal with all these dental problems. There’s no survivorship care protocol out there that tells long-term survivors what to do.
At the beginning of my journey, even though it was very bleak, we had a miraculous response and we knew things were going well. I think that’s where somebody should have intervened with a survivorship care plan, letting me know I needed to look out for X, Y, and Z. When someone is on the upswing, sharing a survivorship care plan would promulgate hope for them. It also takes them away from day-to-day treatment and gives them something to look forward to beyond cancer or any chronic illness.
If you had a magic wand, what would you change about the health system?
I often get emails from patients with stage four cancer in remote parts of the country, being treated in a community hospital, nowhere near an NCI Cancer Center. They’re told they’ve been deemed inoperable, but want to get a second opinion.
To get a second opinion, they have to burn their scans to disk, get paper pathology reports, paper doctor notes, paper medication lists, and send them snail mail to somebody at a healthcare system, and hope and pray they get them. Then they have to find out who’s going to give them a second opinion that’s going to meet their insurance.
I’ve had people send me all of their records for me to try to bootleg down to the University of Pittsburgh to get a second opinion. For one patient, the day her stack of paperwork arrived on my table, she died. It was one of the lowest points of my advocacy career. With all the technology we have, this should be streamlined to improve the process and save lives. This would make a tremendous impact on so many different disease areas and cancers.
What’s your take on equality around getting more advanced cancer treatment available more broadly?
When patients contact me, I have my regimen of questions that I ask, and the number one thing is if they’ve been seen at an NCI Designated Cancer Center.
NCI Designated Cancer Centers have standards of care and accepted protocols of treatment that are peer-reviewed and universally accepted. If they’re nowhere close, can’t drive there, or don’t have the financial resources to get there, what should they do to get that standard of care? We need to use technology, like telemedicine, to reach the unreachable and get these patients in the middle of these rural, underserved areas connected to the standard of care.
What are you most looking forward to at HIMSS?
Through my experiences, I really feel like I’m an ambassador of the patient voice. I’m most looking forward to representing thousands, millions of patients who don’t feel heard, who feel intimidated by the white coats, who want better care, who deserve better care. Those who don’t know how to self-advocate, don’t know what questions to ask, and don’t know what they don’t know. I’m going to represent them in getting technology to help them.
Learn more about how our Collaborative Health Platform is helping organizations empower & support patients — schedule a meeting with the Carium team at HIMSS.